OIFE believes that all clinical trials and research projects affecting OI directly, should have some kind of patient involvement. Patient involvement can happen in different ways and in different phases of a project.

Sometimes advice from a new and unexperienced parent or a child is needed. Other times a person with OI, who can represent a larger group and speak on behalf of many, should be involved. A so-called patient representative. Sometimes a project needs the experience of a patient expert and sometimes advice from a patient organization who knows the international OI-community is required. Usually this is when OIFE comes into the picture. But we can also offer assistance to find people in all the roles described above.

Some organizations have been talking about involving the voice of the patients for 20 years already. But to some countries or groups, the concept is still relatively new and even revolutionary. Fortunately concepts like patient involvement, patient empowerment and patient engagement have gradually become more commonly known. Especially in research and development, but also in policy work, development of new services and support.

And this is good! There is only one problem – we are not patients 24/7. We are not living our lives in hospitals or at the doctor’s offices. And thank goodness for that! We are living our lives out in the real world, with challenges and opportunities that are not connected to medical treatment. We are parents, employees, students, sisters, brothers, owners, friends, volunteers, athletes, artists, refugees and in short…people. People who want to influence the services we get and treatments that are being developed, but without defining ourselves as patients 100% of the time.

So, what can we do about this? We want to promote the concepts even more because patient involvement is important. But we don’t really like the terminology. And do we really have a good alternative? In Norway we say user involvement, because people are users or recipients of services. But to me that sounds more like drug users. Or abusers for that matter… What about patient and public involvement (PPI) as they say in the UK? Maybe? But I still feel something is missing. Where are the people? The individuals? How can we make sure that people’s voices are being listened to?

And what about the organizations? They can also play an important role in patient involvement. Sometimes as advisors, but more and more frequently as partners. Our voices are wanted in research projects, consortiums, and clinical trials. But is it on our terms or just to tick off a box in the grant applications? Is our input really wanted and taken into consideration both when prioritizing topics for research, developing a hypothesis, or creating project plans? Is our time and effort compensated and our knowledge and experience really appreciated? Does the researchers or companies really understand what we can bring to the table? Many times, the answer to this is no. But things are slowly changing. And only with our help and advice, can the situation improve.

I’m looking forward to a future where patient organizations are regarded as true partners and people with OI who knows a lot about OI and research, can be regarded as true experts. And where people with OI, who get involved or engaged in R&D can be regarded as people with complex lives and not just patients…

Written by Ingunn Westerheim, OIFE president

This article was first published as the editorial in OIFE Magazine 1-2022.